Friday, December 23, 2011
A few have asked how Zoey is doing so I am copying an email I got from her Grandpa. If you haven't sent her a card, it is not too late. THANK YOU EVERYONE!!!
At the beginning of the week Grandma and I made the 5 - 6 hour round trip to Los Angeles and spent about two hours with Zoey and her Mom. Visiting is more difficult than you'd think. We have to wear masks and rubber gloves to protect Zoey from any possible infection. It's difficult because you can't touch, kiss the forehead or hug this person we love some much. She can't even see if we are smiling because of the masks. But it was a joy to let her know how much she is loved. We even had the opportunity to take a half hour walk with her, making four round trips the length of her "U" shaped floor. Out in the hall, we can take our masks off and Zoey has to wear a mask. After the walk Grandma got to put some lotion on Zoey's feet. Not sure if Zoey or Grandma felt better because of it. A note on the masks, even the nurses and cleaning staff must wear fresh masks and gloves when entering her room. At least we were not required to put on a gown.
While this week had it's share of difficulties, there was much more good news than unsatisfactory reports. You may recall that besides the Leukemia, Zoey had been diagnosed with complications: Aspergillus fungus in her lungs, and HLH. Both are deadly if your immune system is compromised by Leukemia. The results of last weeks Bone Marrow extraction an biopsy indicated there was no detectable Leukemia or HLH present. WOW! Thank You Lord! Thanks to medical teams in San Diego and here at City of Hope. Early in the week they did a C.T. scan of her lungs. Only one fungus nodule was detected. It was .6 cm in size when last measured. This week it measured .2 cm. Again, WOW! Thank You Lord! Thanks to medical teams in San Diego and here at City of Hope.
So, what made for a less than perfect week? Pain management continues to be a major issue preventing her discharge. They believe the pain is a result of Osteoporosis, which is a side effect of the Steroids treating her Graft-Host disease. They are reducing her Steroids as quickly and as safely as possible. By the end of the week she was being treated just once a day instead of twice and the dosage has been reduced significantly. If the Graft-Host disease returns, they will treat it as if Zoey is allergic to Steroids. They've two alternate treatments which have been successful in patients that can't tolerate Steroids. More on that if they are used. The Steroids also help create high sugar levels in her blood. These diabetic symptoms are treated with injectable insulin and oral insulin. Diet and exercise are also important parts in reducing blood sugars. They are getting a handle on this problem as well as her calcium levels in her blood. To pass time, Zoey and Mom play catch with a small stuffed animal, and are working on a list of "Things I'm going to do when I get out of CoH." Some of the things she shared: Learning to Drive (Zoey will be 19 the end of January). Get a Parakeet, and maybe raise some Quail for their eggs. Snow can be seen in the local mountains. Yes, it does snow in Southern California.
Her Bone Marrow looks good, has all the right components, but it just isn't producing like it should. This is an occasional pattern in some patients. Her medical team is concerned, but not worried. They've given her a couple of drugs to stimulate growth. That seems to work for a short time, but when the drugs wear off, the production slows down. Speaking of down, it the beginning of the week she tested positive for a bacterial infection called C-difficile. It's very common and treatable with oral antibiotics. Now when Zoey and Mom leave the room for walks, they both must wear gowns as a protection to other patients on the floor.
Didn't mention her blood count labs this week. They were all over the place. Mostly low reflecting stalled Bone Marrow production. She did receive blood once and platelets 4 times this week.
Zoey's Dad is arriving on Sunday for a week, giving Mom and Zoey a change and a break.
We are thankful and praise God for His Goodness, and hope you will continue to pray for and support Zoey and family during this Holy Christmas Season. For those of you that celebrate alternate Holidays at this time, we appreciate your very special support.
Besides our thankfulness, Pain management, Bone Marrow production, Bone healing, bacterial infection, and getting discharged into the Village will be my prayer focus this week. I know that's a lot, but not too much for God. Hope you'll join in this effort.
Grandpa Dave 12/17/11 -
375 days in the hospital since diagnosed August 25, 2010
90 days at City of Hope
81 days since Bone Marrow Transplant
Cards and Christmas greetings can be sent to:
1638 Braddon Way
El Cajon, CA 92021-1408
Monday, November 14, 2011
I am going back to my old job, I had a meeting with the bosses of my new job today and they said that they spoke to my old boss and said that this job is not working out for me. The new bosses did not want to give me a chance. So, I feel like a yoyo. One feeling sorry for myself, one feeling ashamed, one feeling a loss. On the other hand, I missed the old hours of my other job. I missed having time for just ME and not having to beg for a day off even though I was not hired as full time, they had me working full time.
I know it is probably the best for me, just feel like a failure, I know.. those old words.
I did my best and gave it my all. I put my heart into it but it was not a good fit.
I need a few days off before I go back to my other job.
Yes, they are giving my old job back, that is not the emotional roller coaster that I am on though. I know that is a good thing, I am union and they have to give me my other job back, I have worked for the company for almost 33 years. I am eligible to retire next March if I want to and that is an option.
The old tapes I am fighting that I am a failure, feel like I am bad for not being good enough for them. I do know it wasn't for me and I need to keep telling my brain that. I did try my VERY best and even more. I met some great people whom I am sad having to leave.
It is a loss and it needs to be grieved and let go. Not to dwell on it too long. For me though, the fight of those old tapes from my parents are eating me up. I should be happy and blest but the guilt and shame is swallowing me up. It is going to be hard going back there and hold my head up high. I am taking a few days off till I restart, after Thanksgiving.
thanks for all your support.
Sunday, November 13, 2011
If you read my previous blog, it hit me really deep. All of my childhood fears came rumbling back up with full force. Something I loved was being threatened of being taken away. Something that made me feel good and HAPPY!! My therapist finally helped me cry, I was holding all the many years of pain inside and too afraid to feel it. I wanted to run away instead of feeling it and letting it go. Of crying and healing my past. All the guilt and shame came back up with what was currently happening. Telling me that I was not good enough. It w as like 50 years of guilt, shame, darkness and pain.
Now, I need to stand up for what I love and believe in. I need to stand up for the deeply hurt little girl inside me. For all those times my mother made me feel less than and worthless. For all those times she would take away something that made me happy and love. This is a very scary thing for me, even thinking about it brings tears to my eyes.
I need to stand up for me right now and for my whole lifetime. They are asking for a meeting with my Union and the upper boss as well who is not very nice at all. I need to stand up to her as well.
So, please pray for me whenever we are supposed to have this meeting this next week with the big bosses and my union. I of coarse will have my angels on my side.
Thanks for all your support, With much love........
Get An Email Alert Each Time IMJETTA8 Posts